I have been asked a few times since my last blog, “What does this decision mean?”
My best answer is simply, “I am not sure exactly.”
The truth is, I have no idea what will happen once the intrathecal baclofen pump is removed. I only have the week I had without it in 2011 as a clue.
While that wasn’t a swell time, I was able to manage. I could hobble around my own house, use a walker in open spaces for a while and did the wheelchair for distances.
Since my body is in worse shape now than it was in 2011, I have to presume that it might take a bit more of my own physical therapy to be there.
I still have many questions for two of my doctors. I need to know if we can wean me down on the baclofen dose in the pump leading up to its removal, and I need to know what the plan might be for medication management in absence of the pump’s magical delivery system.
Since I cannot get appointments any time soon to ask these questions, I am going to try my hand at going through nurses and phone messages. As I know more, I will share more.
In the meantime, I am making preparations. I finally have my own washer and dryer right here at home. I have a friend who is going to reinforce my wheelchair ramp out back. I have to sand and paint my raised potty chair, along with various other little things.
I plan to continue to walk my dogs, but will need to get a power wheelchair or scooter to do so. There are some logistical things to figure out also since I am not likely going to be able to drive my car.
All of that being said, an opportunity awaits to see how well I can rehabilitate my body once the pump is out. I am ready!